I only remembered that today was the day, eight years ago, that a blood clot in my lung changed my life because my phone reminded me. That little event reminder popped up and said “PE RUN” like it does every year. I saw it late last night. As I drifted off to sleep, I thought about what I wanted to say today. The answer eluded me by morning, and so, I went about my day not giving it much more thought.
Eight years ago, it was a Saturday. I went for a short-for-me run of about two miles. I had been recovering from a marathon months earlier, or so I thought, and I knew getting back into running would be difficult. Still, after those miles, the familiar pain from an overuse injury started in my calf, but then something new happened. By later that morning, walking was difficult, and my whole leg hurt. I took a nap, and I woke up with pain in my side. I took a hot shower, and convinced myself I had a bad side stitch. I thought it was all related to my run – but it wasn’t. By Sunday night, I could not breathe, or lay down flat, or walk very far without excruciating pain. I still thought I was fine, though. My family called my primary care doctor who called me. I told him how I felt, and he told me to go to the hospital because he believed my life was in danger due to a blood clot that broke off from my leg (DVT) and traveled to my lung (PE). He was right, and I spent the better part of a week in the ICU as doctors worked to stabilize my condition and find out what happened.
My story is not unlike a lot of other people’s stories. I chose to tell it in a public space, though, because I wanted other people to know that blood clots can happen to anyone, even younger people who are active, trying to eat right, and losing weight. I wanted other people to know that the signs and symptoms of blood clots could save your life, or save you the pain and years of recovery that I went through when mine went to my lung. I wanted people who have been through a blood clot to know that recovery can be extensive, or difficult, and that it isn’t just physical. I wanted people to know that depression and anxiety might be something they have to deal with too. I wanted people to know that grief can happen without death. Grief can happen when your whole life is changed unexpectedly. I wanted young people who had a blood clot to know that younger people like them were out there, feeling alone and hopeless. I wanted to make a difference, so I started this blog.
A lot has changed for me in eight years. Physically, I am recovered from my blood clots. I do not suffer from long-term complications with my leg or with my lungs. I do, however, continue to take warfarin because of the underlying reason for my blood clots, which is an autoimmune disease called antiphosphlipid syndrome, or APS. APS can increase a person’s blood clot risk. I was diagnosed with APS in the weeks following my blood clot diagnosis, and since there presently is no cure for APS, I will continually treat it. The best way to do that is by reducing my blood clot (and stroke) risk, so I take a blood thinner called warfarin. It is the best option for me, and it doesn’t interfere with my life to a great extent. I go for venous blood draws every 3-4 weeks because warfarin needs monitored to ensure it is working properly, and I see my hematologist every few months as part of managing my condition. APS can be a scary diagnosis, and there are times I do wonder what the future holds for me, but for the most part, I live normally with it.
Emotionally, I have recognized and worked to overcome some of my greatest challenges just in the last year. This meant addressing my lingering anxiety and post-traumatic stress disorder, or PTSD. Facing the fact that I was struggling with trauma beyond anxiety was not an easy realization to come to, and I did not arrive there on my own. I survived; I didn’t need help. But, I did. Skyrocketing blood pressure every time I met with my hematologist (but normal everywhere else and every other time) led him to address the topic with me, and in turn, he recommended a specialized therapist for me to talk to. Medical PTSD is a real-life thing, and trauma compounds upon trauma, so it can build upon previous experiences in your life. Listen, if your emotional state after a blood clot is causing you to not be able to function – eat, sleep, think, work, enjoy life – normally, talk to a trusted medical professional. If you are consumed emotionally by what happened to you, seek help. As it was shared from my doctor to me: You did not survive physically to suffer emotionally.
Now, I can finally say, with this passing year, I am no longer haunted by the memory of my experiences. I remember the pain, but in truth, it’s not specific now. I remember it “hurt more than anything in my life,” but I don’t remember exactly what that felt like. I can hear stories – your stories – and not be consumed by my own experiences. I can tell my story and not be overcome with my emotions. But, all of this doesn’t mean I don’t have work to do, or that BCRN is going anywhere. For me, it means I have arrived at a new place. A place where I am now better suited to providing support and resources for people who are back where I was eight years ago. My simple motto remains the same now as the first time I wrote it on the day I launched this blog: There is hope for healing from blood clots and you are not alone.
There is still hope.
You are still not alone.
Hope for healing remains the cornerstone of the work I do here now. If you have been diagnosed with a blood clot, or if someone you know has, there is a wealth of blog posts detailing my recovery experiences, as I was experiencing them: Visit www.BloodClotRecovery.net. There is a community of peers waiting to support on your journey: Join the BCRN Group on Facebook. There are regular posts and messages that I share on social media as often as I can: Follow me publicly on Facebook and on Instagram.
There is hope for healing from blood clots, and you are not alone – still.
Reader Writes In: Where are you in your recovery journey? Are you just starting out or has it been some time? How have things changed, or not, for you?
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It was the beginning of March 2019 for me. I had some HORRIBLE back pain, but ignored it as I have back pain frequently anyways. But this got far worse much quicker. Later in the day it felt like I had one of my cats sitting on my chest. Moving was uncomfortable for the back as well as the chest. I couldn’t even stand to wash one dish. At that point I knew something was wrong. My Dr.s office was closed by that time, so I decided I would go in first thing in the am at open and wait for a spot to open up. When my regular Dr. Found out I was waiting he pushed to get me in quicker, though still with someone else, he over saw what was going on too in between his other patient. My stats came back fine, but I was having difficulties breathing and even though I am a heavy person I never had breathing issues. I was sent to the ER to rule out heart attack. Again baffling Drs. As things came back in normal ranges. Thankfully they pressed on and ordered a CT scan…and there it was, a MASSIVE saddle PE, and multiple smaller clots in both lungs. They have used my case as a teaching case since then. Here it is now.June of 2020 and it’s been a different 15 months. I started off scared of every cut. Scared of getting another clot. Tired of not breathing right. Still the breathing can be frustrating as heck. I can power walk back and forth through work several times no problem. Then another time I can walk normal just about 4 rooms down and I’m out of breath. It is so VERY frustrating. I used to mention this at my INR appointments, but I got tired of having to follow up on it too, so I’ve stopped mentioning it and just deal with it as part of the way life is anymore. I am not as orginized as I used to be before the PE. I used to create menus, to do list, and all and now I just don’t….can’t keep up. Life has just changed. I’m about to have surgery in a couple of days so I have been off the warfarin for a few days so far. NOT looking forward to those horrible LOVENOX shots after surgery. I still have knots in my stomach from a year ago on those. My stomach looked like a bag of large dark purple grapes as I took then for 2 months. Hopefully won’t be as long this time. I am as uneasy about those shots as I am about my surgery. A different way of life is what I keep telling myself. I will see my first grandbaby in about 2 months so looking forward to that and my “baby” turns 18 this year too. Reading what others have gone through has made me feel “normal” and so I shared too.